“Illustrating” the Role of the Expressive Arts Among Children and Youth with Cystic Fibrosis: A Narrative Review « Illustration » du rôle des arts de la scène chez les enfants et les jeunes atteints de fibrose kystique : une revue narrative

Main Article Content

Stephanie Posa
Fiona Moola

Abstract

Abstract: In this paper, the authors conduct a narrative review of the literature to explore the role of the expressive arts in the lives of children and youth with cystic fibrosis (CF). While most research designs in this review were case studies, researchers used a variety of art forms in their studies, including poetry, photography and drawing. Our findings reveal that researchers used the expressive arts to understand and address the psychosocial states, social health, physical health, and coping patterns of children with CF. The expressive arts might be a powerful tool to explore the facets of health in this population.


Key Words: Cystic Fibrosis; Expressive Arts; Narrative Review; Child; Youth.


Résumé : Les autrices proposent dans cet article une revue narrative de la littérature afin d’étudier le rôle des arts de la scène dans la vie d’enfants et de jeunes atteints de fibrose kystique. Si la plupart des études liées à cette revue relèvent d’études de cas, les chercheurs ont utilisé pour leurs études plusieurs formes d’art, notamment la poésie, la photographie et le dessin. Nos résultats démontrent que les chercheurs ont fait appel aux arts de la scène pour comprendre et aborder les conditions psychosociales, la santé sociale, la santé physique et les modes d’adaptation des enfants atteints de fibrose kystique. Les arts de la scène pourraient bien être un excellent outil pour étudier les diverses facettes de la santé au sein de cette population.


Mots-clés : fibrose kystique, arts de la scène, revue narrative, enfant, jeune.

Article Details

Section
Articles

References

Beerbower, E., Winters, D., & Kondrat, D. (2018). Bio-psycho-social-spiritual needs of adolescents and young adults with life-threatening illnesses: Implications for social work practice. Social Work in Health Care, 57(4), 250–266. https://doi.org/10.1080/00981389.2018.1430091

Borowitz, D., Lubarsky, B., Wilschanski, M., Munck, A., Gelfond, D., Bodewes, F., & Schwarzenberg, S. J. (2016). Nutritional Status Improved in Cystic Fibrosis Patients with the G551D Mutation After Treatment with Ivacaftor. Digestive Diseases and Sciences, 61(1), 198–207. https://doi.org/10.1007/s10620-015-3834-2

Brown, C. D. (2007). Facilitating Therapeutic Expression and Communication through Play. Medical Principles and Practice, 16(1), 27–32. https://doi.org/10.1159/000104544

Browne, J., & Talmi, A.(2005). Family based intervention to enhance infant-parent relationships in the neonatal intensive care unit. Journal of Pediatric Psychology, 30, 8, 667 – 677.

Burns, R. (2016). Psychosocial Well-being. Retrieved from https://link.springer.com/referenceworkentry/10.1007/978-981-287-080-3_251-1

Burton, J. H., Marshall, J. M., Munro, P., Moule, W., Snell, G. I., & Westall, G. P. (2009). Rehabilitation and Transition After Lung Transplantation in Children. Transplantation Proceedings, 41(1), 296–299. https://doi.org/10.1016/j.transproceed.2008.10.047

Chandler, J. D., Margaroli, C., Horati, H., Kilgore, M. B., Veltman, M., Liu, H. K., Taurone, A. J., Peng, L., Guglani, L., Uppal, K., Go, Y.-M., Tiddens, H. A. W. M., Scholte, B. J., Tirouvanziam, R., Jones, D. P., & Janssens, H. M. (2018). Myeloperoxidase oxidation of methionine associates with early cystic fibrosis lung disease. European Respiratory Journal, 52(4), 1801118. https://doi.org/10.1183/13993003.01118-2018

Cystic Fibrosis. (2019, December 23). Retrieved from https://www.nrshealthcare.co.uk/articles/condition/cystic-fibrosis

Dabbs, A., Hoffman, L., Swigart, V., Happ, M., Dauber, J, McCurry, R., & Iacono, A. (2004). Striving for normalcy: symptoms and the threat of rejection after lung transplantation. Social Science and Medicine, 59, 7, 1472 – 1484.

Dzibban, E., Saab-Abazeed, L., Chaudry, S., Streetman, D., & Nasr, S. (2010). Identifying barriers to treatment adherence and related attitudinal patterns in adolescents with cystic fibrosis. Pediatric pulmonology, 45, 4, 450 – 458.

Failo, A., Beals-Erickson, S. E., & Venuti, P. (2018). Coping strategies and emotional well-being in children with disease-related pain. Journal of Child Health Care, 22(1), 84–96. https://doi.org/10.1177/1367493517749326

Farrell Fenton, J. (2000). Cystic fibrosis and art therapy. The Arts in Psychotherapy, 27(1), 15–25. https://doi.org/10.1016/S0197-4556(99)00015-5

Fereday, J., MacDougall, C., Spizzo, M., Darbyshire, P., & Schiller, W. (2009). “There’s nothing I can’t do – I just put my mind to anything and I can do it”: A qualitative analysis of how children with chronic disease and their parents account for and manage physical activity. BMC Pediatrics, 9(1), 1. https://doi.org/10.1186/1471-2431-9-1

Gao, J., Arden, M., Hoo, Z. H., & Wildman, M. (2019). Understanding patient activation and adherence to nebuliser treatment in adults with cystic fibrosis: Responses to the UK version of PAM-13 and a think aloud study. BMC Health Services Research, 19(1), 420. https://doi.org/10.1186/s12913-019-4260-5

Goodill, S. W. (n.d.). DANCE/MOVEMENT THERAPY FOR ADULTS WITH CYSTIC EIBROSIS: PILOT DATA ON MOOD AND ADHERENCE. Alternative Therapies, 11(1).

Gruet, M., Decorte, N., Mely, L., Vallier, J.-M., Camara, B., Quetant, S., Wuyam, B., & Verges, S. (2016). Skeletal muscle contractility and fatigability in adults with cystic fibrosis. Journal of Cystic Fibrosis, 15(1), e1–e8. https://doi.org/10.1016/j.jcf.2015.05.004

MacDonald, K. (2017). Using poetry to explore normalcy as a coping mechanism for young people with cystic fibrosis. Journal of Research in Nursing, 22(6–7), 479–491. https://doi.org/10.1177/1744987117732615

Marshall, B. C., & Nelson, E. C. (2014). Accelerating implementation of biomedical research advances: Critical elements of a successful 10 year Cystic Fibrosis Foundation healthcare delivery improvement initiative. BMJ Quality & Safety, 23(Suppl 1), i95–i103. https://doi.org/10.1136/bmjqs-2013-002790

Meyer, C. (2001). A case in case study methodology. Field Methods, 13, 4, 329 – 352

Morton, A., & Wolfe, S. (2015). Enteral tube feeding for cystic fibrosis. Cochrane Database of Systematic Reviews. https://doi.org/10.1002/14651858.CD001198.pub4

Pae, C. (2015). Why systematic review rather than narrative review? Psychiatry Investigation, 12, 3, 417-419.

Parry, A., Barriball, L., & White, A. (2015). Factors contributing to registered nurse medication administration error: A narrative review. International Journal of Nursing Studies, 52, 1, 403 – 420 .

Pinquart, M. (2013). Body image of children and adolescents with chronic illness: A meta-analytic comparison with healthy peers. Body Image, 10(2), 141–148. https://doi.org/10.1016/j.bodyim.2012.10.008

Pop-Jordanova, N., & Demerdzieva, A. (2016). Emotional health in children and adolescents with cystic fibrosis. PRILOZI, 37(1), 65–74. https://doi.org/10.1515/prilozi-2016-0005

Quittner, Opoparo, L., Regoli, M., Jacpbsem, J., & Howard, E. (1992). The impact of caregiving and role strain on family life: Comparisons between mothers of children with cystic fibrosis and matched controls. Rehabilitation Psychology, 37, 4, 275- 290

Sawicki, G., Sellers, D., & Robinson, W. (2008). Self reported physical and psychological symptom burden in adults with cystic fibrosis. Journal of Pain and Symptom Management, 35, 4, 372 – 380.

Sheehan, J., Hiscock, H., Jaffe, A., & Hay, M. (2013). Caregiver coping, mental health and child problem behaviours in cystic fibrosis: A cross sectional study. 21, 211- 220.

Sweat Test. (n.d.). Retrieved from https://www.cff.org/What-is-CF/Testing/Sweat-Test/

Tierney, S. (2012). Body image and cystic fibrosis: A critical review. Body Image, 9(1), 12–19. https://doi.org/10.1016/j.bodyim.2011.09.001

Titchkosky, T., & Michalko, R. (2009). Rethinking normalcy: A disability studies reader. Canadian scholars press: Toronto

Truby, H., & Paxton, S. J. (2001). Body Image and Dieting Behavior in Cystic Fibrosis. PEDIATRICS, 107(6), e92–e92. https://doi.org/10.1542/peds.107.6.e92

Wenninger, K., Weiss, C., Wahn, U., & Staab, D. (2002). Body Image in Cystic Fibrosis – Development of a Brief Diagnostic Scale. Journal of Behavioral Medicine, 14.